LYMEPOLICYWONK: THE COST OF DENIAL—THE DOLLARS AND SENSE OF IT
The cost of an illness includes medical and non-medical costs. Insurers bear the burden of medical costs for covered care, while society bears the cost of non-medical burdens. Saving a buck from insurance costs, only to spend 4 bucks on non-medical costs helps insurers at the expense of society. It really shifts the burden of an illness from the insurer to society. A recent article by Dr. Cameron makes this relationship in Lyme disease clear. The article "Proof that Chronic Lyme Disease Exists" was published as an open access article (meaning you can read it and download it without cost). He has done a thoughtful job pulling together statistics from a number of different studies to demonstrate the high rate of persistence of arthritis, neurocognitive impairment, neuropathy, skeletal pain and fatigue for years after treatment in patients diagnosed with Lyme disease. For instance, the rate of persistence of symptoms in patients after short term treatment for Lyme disease was 34% in Massachusetts.
One of the most interesting discussions in the paper is the societal costs estimated to be $203 million for CDC cases reported in 2002 alone. Given that 10 fold under-reporting is widely acknowledged, this could mean $2 billion per year. These statistics are only for incidence (annual reported cases) and do not reflect patients who remain ill for years (prevalence). (That 34% Massachusetts figure shows prevalence) So, really on an on-going basis, given the number of patients who remain ill after short term therapy and the number of years they continue to be ill, we are talking about an incredible amount of money. A penny here a penny there and before you know it, denial of the scope of the problem becomes not an issue, but THE issue. 88% of the societal costs are “non-medical”—meaning that attempts to curb medical costs by denying medical care as the IDSA guidelines permit, may save insurers money, but does so by increasing societal costs. This is called Robbing Peter to Pay Paul. One thing that’s clear is that the IDSA solution of “doing nothing” to address this problem is economically unsound.
I include a couple of snippets from the article below, but I encourage you to read it in its entirety given that it is open access.
“The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Thirty-four percent of a population-based, retrospective cohort study in Massachusetts were found to have arthritis or recurrent arthralgias, neurocognitive impairment, and neuropathy or myelopathy, a mean of 6 years after treatment for Lyme disease (LD) [1]. Sixty-two percent of a cohort of 215 consecutively treated LD patients in Westchester County were found to have arthralgias, arthritis, and cardiac or neurologic involvement with or without fatigue a mean of 3.2 years after treatment [2]. Klempner trials’ subjects presenting with “well-documented, previously treated Lyme disease…had persistent musculoskeletal pain, neurocognitive symptoms, or dysesthesia, often associated with fatigue” and were ill during a mean of 4.7 years after onset [3]. Fallon trial subjects presenting with “well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment,” were ill during a mean of 9 years after onset [4]. Krupp LD subjects presented with “persistent severe fatigue at least 6 or more months after antibiotic therapy” [5].”
“The economic burden of CLD has yet to be addressed. The mean cost estimate of CLD per patient in the US, of $16,199 per annum in 2002 dollars [8], reflects the toll on human health and cost to society. The annual per-patient cost of CLD is substantially higher than the cost for other common chronic illnesses: $10,911 for fibromyalgia [21], $ 10,716 for rheumatoid arthritis [21], and $13,094 for lupus [22]. Eighty-eight percent of the cost ($14,327) of Lyme disease consisted of indirect medical cost, nonmedical cost, and productivity losses. Cutting medical cost would save, at most, only 12% or $1,872 per annum. In 2002, the annual economic cost of LD in the US, based on the 23,000 cases reported to the CDC that year, was estimated to be $203 million [8]. Considering that the actual number of LD cases is believed to be 10 times higher than the number of cases reported to the CDC, the actual annual cost could be $2 billion [23, 24].”
You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.
My initial Doctor was Dr. Cameron, as the disease progressed, I was forced to look into other MD's As well. I have always held Dr. Cameron up high in my mind, he seems to really care about us CLD sufferers. After many different treatments including IV therapy twice, this disease has come back full circle for me. I was infected by one tick bite in 2006, I was in perfect physical condition before the bite. I have gone down hill steadily to this day. All I can say to the CDC is that it's about time you take another look at this disease, forget the costs involved for now, get some new blood in there working on a cure. This disease is effecting thousands of people in the Northeast sector that I know of, it is a horrible disease which doesn't kill you right away like a cancer, but it's almost as bad as being dead in my opinion. I have no life, no energy, my brain is scattered constantly, I cannot do anything that I used to do, water ski, SKI, baseball, basketball etc…the list goes on and on. I cannot even keep my house clean anymore. The anxiety from the nervous system involvement is crippling. I just ended a 6 year relationship because of this disease. Until you experience this disease for yourself, you have no idea what it does to you, your health and life in general, please LOOK harder for a cure. Where are all the brilliant scientists in this country? I would imagine if enough of these scientists concentrated on this disease they could come up with a CURE…Please help us, we are for real.
there IS a cure but it is not found in chemical medicine. earth medicine administered by dr. naram – who's lineage goes back to the doctor who treated buddha, works with ancient formulas. spices and herbs are full-spectrum/no biofilm issues – and it's all affordable. the definition of insanity is doing the same thing over and over and expecting different results – look elsewhere – go to my lyme digest: http://tinyurl.com/healinglyme
Richard, Myself and my two daughters have CLD. We were all infected when we lived in NJ somewhere between 97-99. We moved back to the Reno area and it took until 2006 for me to get diagnoised with LD and then a few years after that for my two daughters. We all still suffer from CLD on a daily basis. I was treated for 4 years, two of them on IV abx for CLD. My daughters have been treated on and off for a couple of years. The cost keeps all of us from seeking treatment on a regular basis. We have insurance, but it does not cover our trip out of state to see the LLMD or the office visit at $260 each. My insurance also will not cover my two daughters for anything accept pills. The problem with the pills is that their stomachs can not handle all the pills. I can not afford to pay out of pocket for injections or IV abx. Did it for 3 months for myself and was paying $95 a day. How can anyone afford to get cured from this disease? Even with insurance with just one RX costing $25 a month it all adds up. Hopefully something will be done to find a cure. I do not want my children to live with this for the rest of their life. We are going back to see our LLMD this month. It has been a year since we have seen him. I hope to hear that they have made a little progress in the treatmet of CLD in the past year. Good luck to all of you who suffer from this disease.
My 64 yr. old husband starting getting shortness of breath and was misdiagnosed for 16 months with asthma.
He could not lay down or sleep.
Finally a doctor listened to us and after tests found that his diaphragm is paralyzed and was diagnosed with probably ALS and possible Post Polio Syndrome, as he did have Polio as a 5 yr. old child. His doctor reluctantly ordered an Elisha blood test that came back negative, so we paid over $1,100 to have the testing done at IgeneX, which came back with 4 positive bands and 1 indeterminate and also positive for Ehriclia Chaffeenis.
None of our doctors here are open to Lyme Disease at all, so we have to drive 2 1/2 hrs. North of us to a Lyme Specialist.
My question is, has anyone else had breathing problems or a paralyzed diaphragm from CLD??
He was on oral antibiotics and just kept getting sick, so he just got a picc line put in, but broke out in hives on his first infusion of Rocephin/Ceftriaxone, which was very disappointing, since it is a Lyme treatment, but is an ongoing clinical trial for ALS, so were really hoping for some good results.
We are waiting for another IV Med tomorrow.
Would love to hear from anyone out there.
Good Luck to everyone.
Please look up the article on this website, it is the best article I have seen so far.
http://www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/
Dixie
p.s. I forgot to mention, my husband has lost 50 lbs.
Richard my story is the same as yours, even seeing Cameron. They don't care. We are expendable. People have been thrown into this meatgrinder for over thirty years.
I hope it doesn't happen so, but I've heard many people say that the old guard have to be dead and buried before we can prevail. Other than that we need an undeniable medical breakthrough.
With the power of the insurance companies to control the media with their spin, Peter may keep getting robbed for some time.
Richard my story is the same as yours, even see Cameron. They do not care. We sacrificed. People were thrown into the meat grinder for over thirty years.
Hopefully it will not happen then, but I have heard many say that the old gum